Accessing Recently FDA-approved Treatments for Dravet Syndrome

By |2020-04-06T15:49:46-05:00April 12th, 2019|Categories: Decoding Dravet Blog|

Rare diseases are difficult to diagnose, research, and treat. Even though more than 7,000 rare diseases have been identified, only about 5% of those have indicated treatments. Our community was extremely fortunate to see not one, but two treatments receive FDA-approval in 2018 with an indication for Dravet syndrome (DS). When no treatment protocol works [...]


By |2019-05-13T14:06:06-05:00April 7th, 2019|Categories: Our Community, Uncategorized|

Meet Erin Reoyo, one of our inaugural West Coast Parent Ambassadors! This #MemberMonday meet West Coast Parent Ambassador: Erin Reoyo! Erin lives in Washington just north of Seattle with her husband, son, and daughter. Her son was diagnosed with an SCN1A-gene mutation and Dravet Syndrome (DS) in April 2016, shortly after his second birthday. [...]

Self Care is Not Selfish

By |2020-04-06T15:47:03-05:00April 5th, 2019|Categories: Decoding Dravet Blog|

Caring for a child or adult with Dravet syndrome (DS) is challenging. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On top of that they are overworked and exhausted in managing their [...]


By |2019-05-13T14:07:12-05:00April 1st, 2019|Categories: Our Community, Uncategorized|

Meet our first male Parent Ambassador - Steve Carlin! This #MemberMonday meet Southeast Region Parent Ambassador Stephen Carlin! Steve lives in Clayton, NC near Raleigh with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome (DS) in 2013 at the age of four. Being self-employed has allowed Steve [...]

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